Earlier this year, the Human Genetics Commission (HGC) gave approval to preconception genetic tests that would determine whether people are carriers of diseases which could be passed on to their children.
Screening is already available on the NHS for diseases such as cystic fibrous, but currently tests are available for only a hundred or so such conditions. New gene screening equipment can give results for over 580 and could soon become available to everyone on the NHS. A fertility clinic in
Following this go ahead, the UK National Screening Committee can now decide whether to introduce the tests in GP surgeries and IVF clinics, with developers of the test arguing that “it is something that should be on the radar of every adult before having a child.” At the moment the report advises that counselling should be available alongside all tests, yet the American company that developed the kit plans to sell it online, without medical advice.
Even more controversial were further developments that appeared in
The Human Genetics Commission concluded there are no “ethical, social or legal issues that should preclude the practice [of screening]”. Others have been more positive still. The British-born researcher behind the new prenatal screening kit, Dr Stephen Kingsmore, has argued that “widespread testing would spare children and their parents the pain of serious disease” (and, more ominously, that it would “save the health service a fortune”).
Admirable though these objectives may be, we need to think very carefully about the use of such technology and, in particular, the direction in which it is leading.
Every parent wants a healthy child, obviously. Yet it is easy to see what kind of impact this research could have on the disabled community. Talk of ‘screening unhealthy genes’ and ‘discarding imperfect embryos’ could very well have a negative impact on those who live with Downs Syndrome, Multiple Sclerosis, even those who were born with a cleft palate. Will they feel their lives are not worth living? Who are we to say which conditions make life worth living or not? It shouldn’t simply be Stephen Hawking or Jacqueline du Pré who remind us that disability is in the eye of the beholder.
Moreover, it is even easier to see how once we can screen out the genetics that cause a disease, we will also screen for genes that will tell us sex, hair and eye colour. The fertility institute in
Increasing medical knowledge is, of course, praiseworthy. But the more we can do, the more cautious we need to be about what we do.
Francesca Henbest is a Theology Student at